Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Saturday, October 13, 2012

Going Home

  UC = ulcerative colitis          Stella = the name of my stoma          ostomate = a person with an ostomy  
  ostomy an artificial opening for the elimination of bodily wastes (includes ileostomy, colostomy, urostomy, jejunostomy, etc.)  

The day before discharge (Monday), they made sure I was "trained" in how to take care of myself.  First they had a nutritionist stop by to talk to me about what foods I can and cannot eat as I'm healing.  For the first few weeks there is still a lot of swelling inside the abdomen, the abdominal wall/incision areas, and the stoma site, and so the goal is to avoid anything that could lead to a blockage.  This includes anything difficult to break down and digest: raw fruits, veggies, nuts, seeds, whole grains, or anything with a visible husk, grain or membrane.  Eating slowly, chewing thoroughly, and drinking lots of water is key.  Approved foods basically consist of all my comfort foods (which I rarely allow myself to eat for both UC reasons and health/fitness reasons): white breads, pastas, potatoes, cheese/dairy, ground meats/fish, eggs, casseroles, soups, etc.  Fruits have to be blended or processed, and veggies have to be chopped as tiny as possible and cooked to death so they are pretty much mush.
Photo op with Stella and the day nurse who
helped me with my first bag change. 

They also had an ostomy nurse stop by to train me on how to change and maintain my ostomy bag.  She walked me through it, giving me pointers and advice, and watched as I practiced.  She sent me home with spare bags and a kit of supplies I might find helpful, and she ordered my first set of supplies to be delivered to my house.  The nurses also gave me pamphlets and booklets on post-op care and living with an ileostomy.  They left me with phone numbers of who to call if I had questions and gave me a packet of paperwork describing everything that had been done to me at the hospital, including written instructions for following up at home with medications and diet, etc.

Dressed and ready to go home.
On Tuesday - five days after my surgery - they discharged me, and by that afternoon I was resting comfortably at home.  After my parents got me settled in bed, they went to pick up my prescriptions from the pharmacy and brought me back a small burger, fries, and shake.  Now, a lot of these types junk foods are actually "approved" by the nurses and doctors after discharge (as long as you avoid pesky vegetables) since they offer little to no risk of blockage, but they are typically warned against by other ostomates so soon after surgery.

From talking to people in online support groups and forums, I found that other people who have gone through this surgery will tell you to avoid things like fast food and pizza during the first couple weeks, recommending a more soft and boring diet until you heal up a bit.  I did plan to be a bit reserved at first, but figured as long as I was cautious and careful and tried only small amounts of things at first to see how I handle it before proceeding, then I would be okay.

So I ate my burger and fries tentatively and slowly, chewing well, sipping lots of water, and taking breaks.  It tasted great, but I was only able to eat about half of it before I got full and had to take a nap.  (Digesting is hard work!)  At each meal since then I have gotten a little bolder, eaten a little bit more at a time, and eaten a little bit faster as I test the waters.  Stella the Stoma and I are learning to trust each other, and so far she has taken everything I've thrown at her like a champ!  I am now eight days post-op and am still careful to chew thoroughly, not eat too fast, and to drink lots of water, but I am pretty much eating full meals now, no problem.  Since my discharge I have had burger, fries, shake, pizza, burrito, cheesy casserole, bagel & cream cheese, chocolates, cookies, brownies, jelly beans, and more with absolutely no problems!  Eating is starting to become fun and exciting again.

Over the last few days at home, things have continued to progress very smoothly.  I've kept up with a regular schedule for my pain meds and have been really quite comfortable, and I have been learning to use my new equipment with no difficulties.  My ostomy output is still quite liquidy and frequent, with lots of gas, but docs say it should thicken up and slow down over the next few weeks as my small intestine learns to adapt and absorb more water, and gas should also die down quite a bit.  Tomorrow morning I will do my first at-home bag change on my own.  I have noticed a bit of reddish, yellowish drainage from my J-pouch a few times as I sit to go to the bathroom, but the doctors say this is normal - I think it's just extra fluid build-up from the surgery draining out the same way my surgical site is draining from the tube in my tummy.  I have been spending a lot of time resting in bed but also try to get up and move around the house often, since it promotes healing.

Before my parents left they went grocery shopping for me and stocked my freezer full of home-cooked meals that I can live on for the next month, so I have felt quite spoiled on the food front since I've been home and eating all kinds of things I haven't been able to eat in a very long time.  Now that I'm eating all this food and am actually able to absorb it, I'll start putting the weight back on quickly and will have to be careful not to gain too much!

Speaking of, I suppose I should include how my weight has fluxuated through all this.  On my 5'7" frame, before my last bout of intense UC, when I was quite fit and pretty muscular, I weighed between 140-145, which is a very healthy weight for me.  In the couple months leading up to my surgery I got sicker and sicker, and by the day before I did my bowel prep for surgery, I weighed 130, which is quite low for my frame but not outlandish.  While I was in the hospital they weighed me a couple times, and I was so swollen and had retained so much water that I was back up to 144...  although I was also still hooked up to equipment that could have affected the scale.  Once I was home and leveled out my hydration levels, I weighed in at around 123 pounds, which is where I'm at right now.  So just between the bowel prep, the surgery itself, the lack of food those couple days post-op, I seem to have lost about seven pounds altogether.  Right now I look a little emaciated, but with the type of diet I'm restricted to over the next couple months and not being able to exercise at all until I heal up, I have a feeling I'm going to gain weight very quickly.

So that's pretty much it up until this point.  I will continue to keep you all posted on how I do weeks and months down the road as I continue to recover from surgery number one and prepare for surgery number two (the take-down).  Of course there have been a couple small bumps here and there, but overall I could not have been more pleased with the way everything has turned out.  The surgery went amazingly well; I am making steady progress in my recovery, and I feel a little more like myself every day.  I can't wait to heal up and regain my strength enough to start working out and being physically active again.  I know that I still have a long road ahead of me, but I am very optimistic about my future.

8 days post-op: yesterday morning right before my parents left... Still in my PJ's and 
morning hair, enjoying a cup of coffee with my bagel and cream cheese.   

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1 comment:

  1. You are so brave. You faced that surgery and recovery like a soldier. I admire you so much. God Bless.


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